DSD Pages

Tuesday, March 11, 2014

Group dispels Down syndrome myths

by Kelly Bothum from the News Journal / Delaware Online:
Like many girls her age, 7-year-old Kayla Kosmalski is rarely at a loss for words.
So when she meets someone for the first time, she's got plenty to say. She might talk about what she's learning in her second-grade class at Cedar Lane Elementary School near Middletown. She might show off a new move learned in her hip-hop class or strum a few chords on her guitar.
Or she might tell you that she was born with Down syndrome, a genetic condition that occurs when a person is born with a full or partial extra copy of chromosome 21.
Years ago, that diagnosis could have meant a life with diluted expectations, little social interaction and limited educational opportunities.
But that's not been the case for Kayla, who learns in a classroom that includes those with disabilities as well as those without them. She takes dance classes and swim lessons with typically abled peers and friends who see Kayla – her sunny personality, radiant good looks and loving heart – rather than an extra chromosome.
It's the kind of life Kayla's parents, Rick and Amy Kosmalski, have worked hard to give their daughter. And it's what pushes them to advocate on behalf of other families raising children with disabilities. The Kosmalskis, along with eight other families, recently formed the 321foundation, a nonprofit organization whose mission is to advocate for people with Down syndrome and their loved ones.
"People today with Down syndrome are going to school with their peers. They're doing the same things as their peers. They may have more medical complications, like heart surgeries, but once you get past those medical symptoms that go along with it, they're driving cars, getting married, getting jobs," said Rick Kosmalski, Kayla's dad.
World Down Syndrome Day will be held March 21, a date intended to signify the uniqueness of having three 21st chromosomes, which leads to Down syndrome. Across the globe, people are encouraged to wear bold, mismatched socks with the hope that the fun footwear could inspire people to ask questions that lead to a discussion about Down syndrome.
"The only way to make something better is to get acceptance from people in the community. The only way to get acceptance is to have them understand it," Kosmalski said. "Knowledge leads to acceptance."Don't be sorryIt's one of the worst things a parent of a child with Down syndrome can hear, even from a well-meaning person: "I'm sorry."
But that's often the reaction of people who have outdated ideas of what it means to raise a child with a disability, said Sheila Walsh, president of the Down Syndrome Association of Delaware. Often, those kind of comments are the result of a lack of education or awareness about the opportunities available to help people with intellectual disabilities.
One of the goals of the advocacy group is to help families raising children with Down syndrome see what's possible. Early intervention programs available through programs like Child Development Watch, along with improved educational, recreational and employment opportunities mean that children and adults with intellectual disabilities have the chance to follow their own interests and hobbies rather than have them decided by someone else.
There's also the desire to help families feel positive about their experiences raising a child with Down syndrome. As part of that, Walsh said, just how parents get the message about their child's diagnosis is critically important.
It's also important to make sure medical professionals are giving balanced information to their patients, said Sue Joe, communications director for the National Down Syndrome Congress. Physicians can unwittingly influence their patients' decisions because of how they talk about the congenital issues.
"It's how the message is delivered," Joe said.Diagnosing Down
Thanks to a blood test and an ultrasound, women already canfind out relatively early in their pregnancy if they are more likely to carry a child born with Down syndrome. In those cases, another invasive test is needed to test cells from the fetus. But a study published last week in the New England Journal of Medicine showed a DNA-sequencing-based blood test improved accuracy.
And while critics say the tests increase the likelihood of a woman opting to end her pregnancy if she knows the child will have Down syndrome, there's also the thought that it gives families more time to learn about the condition and what it's like to raise a child with a disability, Joe said.
Susan Melnik found out at birth that her son, John, now 5, has Down syndrome. Even though she was surrounded by medical professionals, she felt like John's diagnosis was some kind of secret – or worse, something to feel bad about. As a member of the Down Syndrome Association of Delaware, Melnik tries to help parents see their child is more than a disability.
"Everybody plays on the fears of Down syndrome. They make you fearful of the unknown. He's a child first," said Melnik, of Wilmington. "It doesn't make John who he is. It doesn't make him more lovable or not lovable. It's like any other thing that can happen to a child at birth."Physical challenges
For many families, the cognitive challenges associated with Down syndrome often take a backseat to the physical ones. About half of babies born with Down syndrome have a cardiac defect, and many require surgery early in life. Others live with gastrointestinal issues. As adults, those with Down syndrome are at greater risk of developing dementia earlier in life.
Kristin Pidgeon's daughter, Aliza, had her first heart surgery at 3 weeks old. Last fall, she underwent another operation to correct a leaking valve in her heart after her doctors discovered a significant decline in cardiac function. She has regained her pep and then some, leading a busy life as a sixth-grader at Springer Middle School in Brandywine Hundred.
Aliza is fully included in classes at her school, thanks to hard work by her parents, the educators working with her on a daily basis – and, of course, Aliza herself. Pidgeon said her daughter's experiences – both healthwise and educationally – are a reminder that raising a child with Down syndrome goes far beyond the surface.
"When you think of her, it's not just the physical features that are part of her life," Pidgeon said. "They have so many other things they are challenged with."
But she's grateful for the trails blazed by pioneering parents who pushed to make sure their children had access to intensive reading supports, social skills development, recreational fun and other experiences previously only open to typically abled peers.
"I am so thankful for those parents who walked the path before me," she said. "I can only imagine what things will be like in 10 years from now."Work to be done
There have been huge leaps in opportunities for people with Down syndrome, but challenges remain, particularly in navigating employment and independent living opportunities for adults, said Joe, the National Down Syndrome Congress spokeswoman.
"We've come really a long way, but unfortunately, there's still a whole lot of work to be done," Joe said. "We'll hear stories of how one person had a really good experience in one school or with a certain employer. But for every one of those, we have others who don't have that. We say we try to make a difference one family at a time. And really, that's what we're doing."
Only 34 percent of intellectually disabled adults are currently in the labor force, according to a survey by Special Olympics conducted by Gallup and the University of Massachusetts at Boston. That compares with 83 percent of non-disabled, working-age adults who are in the workforce. About 28 percent of working-age adults with intellectual disabilities have never held a job.
It remains a challenge to find the best way to prepare teenagers and young adults with Down syndrome for the next phase of their lives, including creating opportunities for them to play a meaningful role in the community, said Brian Freedman, director of the Transition, Education & Employment Model unit at the University of Delaware's Center for Disabilities Studies.
In addition to employment programs and job training, there is a national movement to encourage people with intellectual disabilities to attend college. The University of Delaware is among 27 universities that received a grant to create a certificate program that allows people with disabilities to explore their interests and potential careers.
"College is a time that most typical developing individuals do that kind of exploration," he said. "That's what we work with people to do. Whether we are working with young adults with Down syndrome through the college experience or early in their career, we want them to have those opportunities. We emphasize internships. We help them develop their network, and that can lead to jobs."
The idea is to develop a long-term plan that includes the goals, dreams and activities the young adult wants to pursue, Freedman said. It can begin in high school. Inclusion and opportunities to interact in the community remain critical.
"At the end of the day, we know it doesn't ultimately benefit someone to put them in an isolated situation where they are only with people with disabilities," Freedman said.
Nick Gianoulis can see the benefits of that kind of self-exploration and community interaction with his daughter, Alyssa, who is 23 and attends the program at Camphill Soltane in Glenmoore, Pa. It's a community made up of young adults with developmental disabilities and includes trained staff members and volunteers who also stay there.
The focus is a combination of educational, vocational and life skills, said Gianoulis, and it provided a needed opportunity for Alyssa to grow as a young woman and also experience the world. Alyssa has lived there for about four years.
"It's a dream," said Gianoulis, adding that the cost to send Alyssa there rivals a college tuition. "They've really established a relationship in the community, and they welcome and embrace Camphill. It's been a joy watching this unfold.
"It's been a joy watching her grow at the same time."